Should we try harder to move Mom?

Debdg

 I am new to this group. this is kind of long as I provide background.

The question I want to ask is “should we be trying harder to relocate Mom? Would she benefit from a move?”

Mom is 85, and was diagnosed with AD 4 or 5 years ago. Symptoms came on suddenly associated with a UTI. She did OK at home with Dad for a couple years. In March 2020 Dad passed, and Mom came home from hospital/rehab to an empty house and pandemic.

My two adult sisters live nearby and both visited her daily, making sure the house was OK and that she had meals (I am 300 miles away). She had little social life other than medical appointments and some phone calls with friends. (Mom never used a computer.) In late 2021 my sister had Mom evaluated and put on a waiting list for a LTC facility nearby.

Things came to a head in Jan. 2022 during an ER visit when evaluation was that Mom needed care 24/7 and could not return home. The hospital found her a bed in a nursing home 20 miles away, and my sister took her there.

Mom has been in this nursing home about 4 months. By about 4 pm daily she wants to go home, if not all day. She does not know how long she has been there, and sometimes says she used to like it there but does not anymore. (She never liked it.) She is still on the waiting list for the LTC home nearer to my sisters.

She seems to have nothing to do. She can no longer follow a story to read (she was an avid reader), doesn’t watch TV. She is sometimes taken to the activities, but not being there I really don’t know how much, and don’t trust her memory to tell me if she did anything.

Medicare ratings are somewhat worse for the facility she is in compared to the one nearer to home. The place she is in is at least 50 or 60 years old and shows it.

During her months there Mom has had at least 3 UTIs, a couple of falls, and been put in a wheelchair and moved to the locked dementia ward, and lost 10 pounds (that she did not need to lose). A couple days ago a nurse found her at night having pushed out the window screen, tossed her jacket out, and was halfway out straddling the window.

Mom said recently (again) “this place seems OK during the day, but it is very bad at night. I want to go live in a home. I don’t care if it is far away and nobody can visit, just get me out of here.” 

Would it likely benefit Mom to move to a dedicated memory care facility, which would likely decrease the frequency of visits (she has daily visits now from daughters)?

My sisters and I are inclined to think that this is the disease talking, and that Mom would be just as unhappy at any other facility. (She does not recognize pictures of her house, so moving her home with full time help doesn’t seem reasonable, even if it were feasible or affordable.) We usually tell her, “well, tonight you are going to stay here,” and let it go. 

It seems like moving Mom, if we could find a space for her, would only complicate her life as she would have new routines to learn. Yet, I have to wonder, what if she is right? How would I know if she were neglected or abused?

May flowers

Welcome to the board, but sorry you are also dealing with this terrible disease.

Is it possible to set up a camera in her room, like Amazon Echo, so you or your sisters can drop in and see what’s going on at night?

Daughter80

I am sorry you guys are all going through this. I am pretty new to all of this as well and will just be moving my mom into MC at the end of this week. 

Have you been to visit? How are the staff with the residents? Do you like where she is now? Does the staff seem to understand how to work with a PWD?  Just asking these questions since I think they would be important in deciding. I could see how it may not matter where she lived. She may just be unhappy regardless, but I do wonder if the staff are trained at working with PWD then I would think this could make a huge difference. ….But night time may be much more difficult. Again just throwing questions out in case that helps. 

Best of wishes to you all. 

jmlarue

To be honest, it makes me wonder when a facility decides to put someone in a wheelchair who's physically able to climb through a window to elope.  The weight loss would also be a concern to me. I've actually witnessed first hand facilities that stick people in wheelchairs and use a transfer belt to restrain them so the PWD can't wander around all the time. I've also seen patients who've had food placed in front of them and abruptly removed after 40 minutes whether they've taken a bite or not. When asked, Admins will claim they just don't have the staff to encourage eating and suggest that a family member come in to assist with every meal if they are concerned. We had to move my MIL out of one such facility.

It may not make a whit of difference in your mom's complaining or exit seeking, but if it was my mom, I'd try to find a better facility for her. If it meant a longer distance to travel for visits, I'd be comfortable visiting less often if I had confidence that she was getting a little more attentive and compassionate care. 

harshedbuzz

jmlarue wrote:

To be honest, it makes me wonder when a facility decides to put someone in a wheelchair who's physically able to climb through a window to elope. 

Normally I would agree with you. But I have a friend whose docile little mother used to shuffle through the house slowly holding onto the furniture or handrails her DD installed for her. My friend used a wheelchair to take her mom for a daily walking on the trails near their home and on any trip to the doctor or errands. But at night she had to alarm the doors because mom became an escape artist who moved swiftly and could disappear into the darkness on their unlit rural road before DD could make it down the stairs. It was as if the moon gave her super-human powers. 

Debdg-

The weight loss and UTIs would concern me. A loss of 10% is corelated with a much higher rate of death in the next 6 months. Has the UTI been effectively treated? Was a culture done to make certain she is on the correct abx and are they taking proactive steps in terms of hygiene to prevent a recurrence? The UTIs may be impacting her ability to adjust.

IMO, a PWD in the mid and early late stages is best cared for in a MCF with dementia-trained staff and dementia-informed activities. Decor is immaterial so long as the place and the residents are clean and cared for. A little "Lived-in" looking is fine. 

At dad's MCF, staff were very tuned into whether a resident was eating and would quickly replace a meal that didn't appeal with something else if the resident wasn't eating.

HB

MN Chickadee

I hesitate to suggest you can do better without knowing more specifics, but it does seem possible. What you are describing was not the norm at the two MCF we had my mom at in middle and end stages. They were very on top of eating, would prompt and assist if someone wasn't figuring it out and hand feed purees in the later stages. The staff were trained in and understood dementia well. There were dementia informed activities let by activities staff during the day that mom could handle. We had care conferences routinely to discuss how she was doing and see if any changes were needed in her care. Do you think she needed to be placed in a wheelchair? If a family member sits with her at a meal to encourage her does she do better? 

Medicare ratings are not always useful. Some of the best facilities in my area (by word of mouth and recommendations from families) have so-so ratings. One with the best ratings is known to be a nightmare. Many metrics are self-reported by the facilities and then not checked by the government, and not necessarily a metric of good care. There has been some investigative journalism on this, such as the NYT, on how they get away with inflating statistics through self reporting. 

I will say that UTIs and falls happen even at the best of care facilities. In the later stages falls are nearly inevitable, no matter the PWD lives at home or a facility. You only have to take your eyes off them for a minute. And once they are in Depends the UTIs just seem to keep coming. Make sure each one is cultured to find the right antibiotic. I would not assume either is necessarily indicative of poor care. Certainly poor care could lead to an unnecessary increase in them. It's hard to say on that. 

I moved my mother in the later stages. The first facility was great in the beginning but then had some changes during covid and I started to wonder if it was still a good fit for her. She was sitting around and dozing in front of the TV way more than before without many activities and the staff turnover was so fast I was suspicious. My gut told me a move was in order. I took the plunge and was very happy I did. The second place had her up and moving more. She stopped losing weight and got a bit stronger and was more alert from the social interactions and activities. I was so glad I did it. I gave her 7 really great months there before she passed that I almost didn't bother with. She was late stage 6 at the time of the move and transitioned so smoothly. I was pleasantly shocked she settled right in. I think part of it was the staff at the new place were so skilled and nice, and part that she was so far along she didn't really notice the surroundings were new. 

If you can't get the weight loss piece figured out you might have her evaluated for hospice. That kind of weight loss alone may qualify her with the dementia diagnosis and they are an added layer of service and an extra nurse to help with care decisions who is not employed by the facility. Good luck. None of this is ever easy.  

caregiving daughter

I would suggest you and your siblings create an objective way to assess the current care facility as well as others. Memory care is a specific level of care and should be taken into consideration. As far as nothing to do, this is subjective. With dementia, folks may no longer be able to read, and may be frustrated trying to keep up with normal conversation. It is important that activities be found that match the cognitive level and interests of your mom.

Debdg

Thank you. I am not aware of public wi-fi in the facility so doubt about a camera. Also Mom would probably move it.

Debdg

Thank you.

I have visited a few times staying several hours each day. The day staff seem to be caring and thoughtful. I have no idea about overnight.

Debdg

Thank you.

Debdg

Thank you.

I have not received communication about the medical care, and I don’t think the sister who is the primary contact has gotten meaningful communication either.

Debdg

Thank you.

Debdg

Thank you.

Quilting brings calm

The best way to know if there is neglect or abuse is to have eyes on the patient, as in frequent visits.  Your sisters are visiting daily.  Would they be able to do so if she  were moved?  Does she eat for your sisters as if she’s hungry or does she seem full?  Weight loss happens as dementia progresses.  Sundowning happens late afternoon and into the evening.  Is it possible that your mom is sundowning  and that’s why she  doesn’t like the place at night? 

Currently every place is short staffed. Is the possible new place better staffed? Do they actually have more activities?    Or are they just a newer  prettier more expensive facility! 

Debdg

Thank you.

I agree having visitors present likely improves attention and care.

Mom seemed to eat well when I was there, sharing my bag lunch and then eating some or all of the meal the home provided. So I was surprised by the weight loss.

Unfortunately there is no designated MCF closer to my sisters. There is a nursing home closer and more highly regarded but it doesn’t have enough staff for them to fill all their beds, hence the waiting list.

Fellow quilter, quilting really helps with stress management.

Yes, it definitely seems like sundowning. Worse some days than others.